Vasculitis UK
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Auto Immune Diseases

I have a Scleroderma as my main AID. The symptoms are similar to Lupus & RA. Along with this I have secondary illnesses that go with it. All are connective tissue disorders: Raynauds , under active thyroid, psoriasis. I thought I had everything until I started with Vasculitis. It started with burning swollen feet, worse on the left side plus my left ear is affected. I a waiting for a Dopplar test to check the pulses in my feet. This latest illness appears to be worse than all the others put together. I have read a lot about it & all your posts. I feel so sorry for you all. I am. 73 years old & also have osteoarthritis. Because of my age & condition I have an Advanced Directive which states that I do not wish to have treatment for any further illnesses. I am already on Prednisolone so I will accept a larger dose to try & get the inflammation under control. I just want to say Good Luck to everyone with this condition.

Does anyone know how to cope with blue toes caused by the Raynauds & burning heels at the same time? Lol

7 Replies

Only advice I can offer re Raynauds is to try and keep your feet warm at all times and not too restricted in shoes. When inflammation active, mine go a lovely shade of black (colour of school ink) when I first step into a warm (not hot) bath ... with matching hands!


Many thanks. Can't wait for black hands & feet. Mine are a dark shade of plum!! x


Same here cinders. Can't help with the blue toes though. My first AID was Rheumatoid Arthritis, followed quickly by Sjogren's Syndrome. I agree with you that Vasculitis is by far the worst of my AI diseases. Although I have a lung disease which tops that, Bronchiectasis is worse than my cancer was! I'm 64. Hope you get the inflammation down. xx


Thank you. I also have sjogren'ns. Sorry you have had cancer. Are you free from that now? Treatment is horrible. I am a retired nurse & have seen many cancer sufferers go through Chemo. It it used for Vasculitis as well.🌝


Thank you cinders. It was breast cancer. I had mastectomy and chemo (no radiotherapy due to my chest disease) and now take an anti-hormone tablet for at least five years. They give us annual mammograms for 5 years and I've had 2 of those already, but that's on the side that didn't have cancer. I've also had a full manual check across all of my chest, lymph nodes and scar tissue, had two of those as well. Only one more due so I'll have to do that myself after that. No sign of cancer at the moment, so hoping that carries on. Mind you, my cancer was far less trouble than vasculitis and/or bronchiectasis! One of the chemo drugs I had was Cyclophosphamide, which as you say, is used for vasculitis. Currently on Methotrexate for RA and Vasculitis. 20ml injections, which is giving me worse side effects than my chemo did!!

Best Wishes. x


You are a very brave lady. I am so pleased you are in remission. I try to stay positive. I have a philosophy that says, "yesterday's history, tomorrow's a mystery & never comes, today is a gift & all we ever have. Sometimes this is all that keeps me going. X


Hi orange8

Thank you so much for the advice. I am glad this medication works for you. I have googled it ( I am a retired nurse of 73.) I think I am probably too old to cope with the side effects. Also, did you know that you shouldn't eat grapefruit if you take this drug? It is the drug of choice for treating gout!!! If only gout was our only problem.

Hope you continue to find relief from your pain.

Thanks again,

Barbara. (Cinders)💜


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